Autism from the inside

Category Archives: Thoughts & Feelings

When I was diagnosed was autism in 2010 – I wasn’t aware of such an “identity” because to honest I was never in that “world” at all. I often wonder that despite the obvious difficulties I had during my development and environment the one thing that I had going for me was the simple “human-hood” which was conveyed by the my parents as a way of connecting with me.

I don’t consider this perception from my parents to be “unique”, “specialised” or “autistic-specific” in its intentions nor in its thinking at the time (although it could have well be seen as that on reflection).

I wasn’t born with a “label”

In many of my blogs I have spoken about the balance of being seen as “human”, “person” and “being” first and as I have been in this “world” for over five years. I have seen the firm importance of seeing people as “people”, by not defining their whole “soul”, “identity”, “being” by their label (or labels) nor having it being overtly defined for them so there is nothing else left.

“Labels” are an adjective not an overall definition

If everybody was to be defined by solely by a “label” wouldn’t it be restrictive, suffocating and narrowing your bandwidth of experiences, perceptions, thoughts and feelings?

Not towing line meant I could see “myself”

I am glad that I haven’t towed the line into the realms of stereotypes, group think, confirmation bias and all the militancy that goes with it. I am glad that my parents after I was diagnosed said that I am still “Paul” regardless. I am glad that I see the importance of seeing somone as a person first. I am glad that I have other interests that take up my time productively such as drawing, poetry, walks in the countryside and meeting up with friends.

People are people regardless

I am free to think and feel and have a more refined outlook that I am firstly and thankfully not being the centre of the universe, not the big answer all to the questions, not speaking for “all” (because no one can) and have a egalitarian view that all people are of equal worth in this world no more and certainly no less.

Negative environments can leave “hidden difficulties” that become about to the mix of things that may not of been there when the person entered them. Mental health is tempestuous subject in itself but looking after one’s own mental health and being aware of the “warning signs” of mental health issues can be a very difficult one to acknowledge and accept that is happening.

Slow escalation of events

Sometimes events can slowly build up from behaviours of others, this may have a slow gradient like effect that initially may seem quite “mild” in the sense that the overall impact is small and may well be just secluded to the event which happened and the person is able to get on with their day with no trouble at all.

Sometimes “resolve” doesn’t come in the form you expect

What if that situation lacks resolve but you yourself want a resolve? What is the situation is being mishandled? And you yourself want it to be handled correctly?

With a moral compass for feelings to not only be acknowledged but to withhold a balanced and healthy level of objectivity.

If those basic foundations aren’t in place for whatever reason and you feel trapped and/or obliged to keep going, there is going to be a tipping point and decision making that needs to be addressed, surely for the benefit of the parties involved.

Let go of the situation and the people within it

My reflections are only from a personal perspective on whence they happened but I believe that one of the primary mistakes that were made by me was to keep staying for the long term – I know why I did. It was primary because I didn’t want to leave; it made me feel uncomfortable for the future and what that meant in the long term.

Positivity and new experiences are valued

When I left the situation my mental health improved gradually to a point where my mental health was on an even keel and was not impacted by mood disorders, emotional regulation problems, clinical depression, and personality disorders. The “invisible chains” that had shackled me where gone I had gained a level of control, autonomy, roundedness with the ability to look back not in shame, self-pity but that a lesson was learned.

When I was diagnosed with autism in 2010 one of the first things that I was told is that was still a “person” even if I didn’t the mechanics and/or “pieces” of my autism that nevertheless was a sage piece of advice that has stayed with me on a personal and professional level.

“Autism” is different for each person so here is a breakdown of the “mechanics”

I have four main personality types which intermingle with each these are human in terms of presentation but will differ form person to person – human beings under stress may develop “disordered” versions of these types affecting social and personal perception, mood management and interpersonal relationships and friendships.

I do not see my whole being as “autism” nor define myself by it. I see it apart of me, in my case the pieces are emotional perception, visual perception, language perception, auditory perception,
body perception, light sensitivity, information processing and learning difficulties with associated mood disorders, exposure anxiety, somatisation disorder, dissociation and personality disorders but they are not a total nor finite definition of my being. I can only speak from my perspective and that is all.

I am “Paul” first with the all the positives and negatives that come with it the likes, dislikes, regrets, dreams and the sense of just “being”. I shall never adhere to the “club” there is to much militancy, over-investing and politics. I see myself as apart of the human race – no more, no less, no more worthy, no less worthy just a person like one of the billions of people on the planet everyone has a story to tell don’t they. 😉

Paul Isaacs is an autism advocate, trainer, and public speaker from England. He says that public speaking about his experiences and the experiences of others has helped him find his voice and develop a true skill. He always emphasizes the positive aspects of how life can be lived with autism. He uses the acronym PEC to describe the qualities people who work with autism should have: Positivity, Empathy, and Compassion. He is also a published author and blogs at Autism from the Inside.

In your most recent blog post, you discussed your dislike of the tendency to attribute someone’s neurology to their entire identity or personhood. However, there are many other autistic self-advocates who insist that this premise is important for improving the treatment of people with disabilities. What advice do you have for parents who are trying to help empower their children with the skills and confidence to be successful and are receiving conflicting information from autistic self-advocates in this area?

I would say that being born a human being first should be seen. Every person on this planet is a human being regardless of ability, disability, race and gender. Understanding the “autism” is very person specific, environmentally specific and situational specific – these different “pieces” which make up the autism have their own unique presentation, and also the way in which the person is affected will differ not only due to the “pieces” and their trajectory, but what the “pieces” are in the first place. It is like being a detective, searching out what works and what doesn’t are both equally important.

With regards to my identity, I see myself as a person and a part of humanity, so therefore I am a person first – personally, my autism affects my visual and auditory perception, language processing, cognitive processing, learning difficulties, etc, but these are PART of me, not the totality of my BEING .

I have personality traits(which everybody has regardless of autism or not) which make me happy, silly, draw, sketch, meet up with people, etc. These are human things which I value. I am not ashamed of my autism, but I don’t glamourise it either. I keep a balanced, open-mind. I can only speak for myself (how autism affects me). No one can speak for ALL, so, in that sense, people can learn from different perspectives and realities.

You were diagnosed at a relatively late age even though you exhibited clear signs of autism when you were young. What do you think was the main reason for this delay? Have you seen evidence of this still occurring today or has autism awareness reached new heights such that this sort of situation will likely never happen again?

I was born in 1986 and although there were specialist autism bases around my area, my autism wasn’t picked up due to circumstantial insistences. I was seen by an educational psychologist in 1993 and was seen by a child and adolescent mental health team in 1996 and an adult mental health services in 2007 and 2008 before I was formally diagnosed in 2010.

I would say it was not anybody’s fault as no information was given to my parents during my time in mainstream education. When I was in secondary school (I gained functional speech between the ages of 7/8), there where several meetings with my head, as well as the latter years of primary school. However, there was an autism base at the secondary school, and I would speak with the students and even attend lunchtime meetings and eat with them.

My Mum though I was solely brain damaged due to the placental abruption and lack of oxygen when I was born and that was the only name she had for my “behaviours,” but she had no doubt that I was a person before any of these difficulties.

What are you asked to speak about most often?

Sensory perceptional and language processing seems to be the one I get asked to do; however, on my booking page I have slowly built up other areas and topics.

What mistakes do autism advocates make?

Getting over-invested in the autism “politics” this where “identity” can become in crisis, and mental health can breakdown. I am talking through observations and also experiencing it myself – Donna Williams an advocate, speaker, consultant and author on the spectrum gave me some sage advice, and that is to take a step back, regain healthy boundaries, find yourself and do socially binding things.

Autism politics can get rather unhealthy to be a part of, there can be militancy by people on an off the autism spectrum that can be rather distressing and uncomfortable to be a part of. My personal opinion is that everybody has a story and that their realities are just as valid as anyone else’s – there should not be a single representation, but a more egalitarian outlook where all person hoods and realities are taken into account. It is my opinion that autism isn’t culture, but a “culture” has been created around autism.

Describe some of the factors that have contributed to the personal and professional success you have achieved today.

My parents have helped me a lot over the years on both a personal and professional level – it started with boundaries, right and wrong, having a moral compass, seeing “failure” as normal and therefore accepted, seeing me as “Paul” first, a boy, a teenager, an adult, and letting me experience the outside world and all that it entails.

What are some of the strengths and challenges you’ve experienced as a result of being on the spectrum?

I still have problems with language processing, visual perception (faces, objects, people), visual distortions (foreground, background), under-processing on my right side (motor and visual), sensory integration, movement, processing “self” and “other” – being mono-tracked and seeing the significance of what is being said and what is happening (life skills have helped so much in this area) and learning difficulties.

I don’t know if my strengths are autie-specific. I do enjoy writing poetry, creating abstract artwork, and writing books. I like creating things, watching movies, and I also like alternate fashion.

What advice do you have for parents of autistic children who respect the knowledge and experience of autistic self-advocates and are looking for guidance in helping their children develop their potentials?

Go with the child on their journey. It will be different for each person – see them as your child first, understand the pieces of their “autism,” and work from there. Let the child experience life.

People ask me at times what was it like to be diagnosed with autism? Did I find myself, the answer that is I understood PARTS of how I function faceblindness, object blindness, meaning blindness, sensory intergration, aphasia, self and other processing, learning difficulties, co-conditions etc.

My parents said you do realise you are still Paul meaning I am a person first and don’t let these things above define “me” because I am a person first. I like art, music, drawing, movies, writing and poertry because I am a person first. I am solitary, idiosyncratic, mecurial, serious, silly because I am a person first and foremost.

With all these labels I have they are a pointer to PARTS of my functioning not my totality strip away all labels and their will always be human being.